Opening of the “My Time” National Forum
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Good morning everyone and thank you, Robyn for that introduction. I’d also like to thank Joy for her welcome to country, and I too would wish to acknowledge the traditional owners of the land on which we’re meeting and pay my respects to their elders both past and present. I should also relay the good wishes of Jenny Macklin who couldn’t be here today, who’s asked me to come along.
But most of all I want to thank all of you for what you do, which I’ll talk about in a little bit, and also the fact that you’re working with people with disabilities which I think is a very important and neglected area of life in Australia.
This forum is a good chance for you to share your concerns, needs and wants. The Government and representatives here appreciate that you’ll be able to pass on a more acute understanding of the challenges which we all face but you deal with on a day to day basis.
The idea of conference and bringing people together is important because it helps exchange ideas on how we can develop and perhaps for some of you recharges your battery, get a sense that you’re not on your own, when at plenty of other times through the year you’ll think goodness me how do we get through some of these things?
But, as I said initially, what interests me most is discussion about disability. In the last 30 months since I was elected to Parliament and had a role and responsibility of working with people with disabilities I realised that up to then I thought I knew our country, I was a union rep, whatever you think about unions we do get out and see a lot of things, and we see pockets of disadvantage and we see lots of great things. But I thought I’d seen disadvantage and unfair treatment, I thought I had its measure a little bit.
But when you enter the world of disability you realise that in this nation of ours, this generous, fantastic, best nation in the world we actually have many people living lives of involuntary exile. And that’s a pretty dramatic statement to make this morning as we launch the MyTime National Forum but when I look at all of you I don’t see people just working in MyTime I see you all as making an individual contribution to try and improve the situation for parents and children with disabilities.
No parent chooses to have a child with an impairment or a chronic illness. Again in recent times I’ve been lucky enough that my wife and I have had a little baby and so you think about the frailty and vulnerability of little children a lot more than perhaps you might otherwise, and are aware of some of the challenges of the thousands of parents who have a child with disability.
The children are not loved any the less by their parents. The DNA hard-wired power of parenthood is too strong for that. But I can simply record the observations of thousands of parents telling me that when they get that diagnosis that perhaps upon birth, or perhaps in the womb, or certainly upon diagnosis in early years when the child is not developing in the way that was expected or hoped for, parents tell me of a sense of shock.
It’s an emotion something like grief, and sometimes it can be – and I don’t know all your circumstances and I’m sure some of you are these very parents that I’m trying inadequately to describe – but it is a loss of the child that you dreamt of, which is replaced nonetheless and very quickly by the love of the child you have.
But a lot of parents tell me about the experience of raising a child with an impairment in Australia is one of isolation. When you’re a new parent ,or a new mother in particular as a lot of the child rearing does fall upon them, it can be an isolating experience anyway, but you reach out and you try and form your networks and in some fashion you develop new friendships and new friendship groups.
With a child with an impairment it is a very isolating experience. You get stares, you get the unfeeling remarks of strangers, you have difficulty talking to old friends about the difficulties, and they have difficulty in understanding exactly what you’re going through.
The fact that the discovery you make that many of the supposed experts, doctors and teachers actually understand less than you do about your child’s disability. A number of parents with children with severe autism tell me that no matter what they say to their GP about telling him not to pull out the big needle and then the consequent reaction, you know, from the child. And the parents just get frustrated.
You have a discovery that all of our institutions are built around the assumption that children do not have disabilities, when in fact it’s far more commonplace than most realise.
The impairment is not the barrier, it’s the barriers that we put up to the person with the disability which is what effectively causes a lot of the problems in society.
I do wonder what happened before the MyTime program was announced. I’m sure that there were cries from parents and families wanting targeted support and services, as there still are now.
But I do know that when you listen to the heartbreaking stories of parents and carers – and I’ve had the privilege of going down, for instance, to the Royal Children’s Hospital, where you see parents at the very initial stage.
Just how the parents face the daily challenges from transport to finding therapy, to travelling in the opposite direction of the traffic, from the geographical distance of a beautiful city like Melbourne, which is relatively easy to get around but nonetheless which is the hours and hours of time and the exhaustion of care.
I do know that many marriages break up under this pressure. I do know that some mums and dads as well as carers have said that there are many emotions associated with caring for a sick or disabled child, and the MyTime group enables me to talk about these things, as my friends with ordinary kids will never understand.
And tackling that sense of isolation is such a profoundly important development to assist people. I do believe that MyTime eases the loneliness for families. It’s proved that people are not islands and that their emotions and fears are being shared, as well as – it beats Google to try and find out what’s going on and where the good services are.
It’s the sort of support and an informal education. It is a chance also to share the triumphs and the satisfactions that come with the challenge of raising a child with an impairment.
I do believe that parents of children with disability are the ones that are best placed to understand their children’s needs, that’s why in other forums on other issues, I strongly advocate for the greatest possible provision of individualised small packages to families. I have no doubt that the parents which you deal with, or the parents – some of whom you may be, are best placed to try and allocate scarce resources in the interest of your children.
What a government should do is give the power and the resources and then hop out of the way. It is true that we only get one childhood. It’s a vivid, stirring, impelling experience like no other. It is a forge which lays the shape to our essential nature, and indeed part upon which our lives will track. Atheistic psychiatrists and theologians of spiritual nature all agree that it makes or breaks us.
It is wrong and unfair to say that the importance of childhood is somehow less important for a child with an impairment.
Because when a child has an impairment it is not the end of the equation. It’s one attribute in an otherwise very complex and unique and vulnerable child.
There is an assumption, I believe, for too many years that the need for the universal childhood experience of play is somehow less for a child with an impairment.
The need to socialise to begin understanding their fellows is somehow less if you have an impairment, which of course is rubbish.
I believe for any child whose needs are not served by mainstream groups, MyTime is a step towards equality. You are part of 250 peer groups scattered across Australia. A hundred – and I see by the attendance some of the people are here, are in rural and remote areas. That’s over a third of all the groups.
Four thousand parents and carers have been assisted through the life of the MyTime program. The 10 Indigenous specific groups in Western Australia and Victoria are significant. I am aware that more is being done to encourage the participation of Indigenous carers, with the creation of the WA – Western Australian Indigenous project.
I acknowledge that the Parenting Research Centre has been hard at work to examine ways to improve participation, how to plug into existing service infrastructures, as well as dealing with the perception of disability in communities and the time to build trusting relationships with Indigenous people.
I think though that when I look at the work that you do, it would be remiss of me not to briefly allude to an even, I believe, an equally significant development which is happening which will make the work of MyTime and the work that you do all the easier.
Disability has not been on the political agenda in a sufficient manner in this country in the past. It is, in my opinion, the last practical area of civil rights. If you can’t access a train or a plane, if you can’t enter a building, if you can’t complete an education, get a job interview, have secure housing, you are treated that you are less equal in this country. And that is the existence, by and large, of many people with disability.
So the challenge of disability not just at MyTime, but generally, and the challenge that the parents that you support face, in my opinion, when it comes to the disability dimension is that people are treated as less equal and that they generally, by and large, tend to be poorer.
George Orwell, he’s a famous writer, and a hero of mine, did say that the problem with being poor is it tends to take up all of your time. I think that goes double for disability.
So how do you challenge these twin evils of poverty and powerlessness? You do your bit from your end of the spectrum for one idea which wasn’t on the political agenda three years ago, and I do believe that they’re due to the intellectual efforts and indeed emotional efforts of the Labor Government, federally, is that the Productivity Commission has now been given a brief to investigate the feasibility of a lifetime care and support scheme.
What I mean by that as an illustration is that if you suffer severe disability through a motor car accident in Victoria or at work, you have a reasonable level of care, and when you need it, not after countless years of being ignored and belittled.
Why is it in Australia that the manner in which you incur your impairment, or the jurisdiction or the geography in which you incur your impairment, determines the level of care?
There’s a lot in life which is a lottery, but it seems to me the provision of care for people with an impairment shouldn’t be part of that lottery.
And it is very good today that the Federal Government is renewing the funding for MyTime groups with 10 and a half million dollars over three years, which is great, and that is important.
But I also think about – and it is a good development. And it’s good that we’ll be expanding the number of MyTime groups hopefully from 250 to 262. That is good. But what worries me is that the parents you work with then go home and still live disjointed lives trying to work out how the service system works with people with impairment.
So what is interesting is the study by the Productivity Commission due to report in July of next year, which will assess the feasibility of the Universal Care Scheme for people with disability, the Social Insurance Scheme. There are plenty of questions, how will it work, how much will it cost.
But I believe that the current status quo cannot be allowed to remain. We spend $23 billion on disability in this country annually and it’s going to grow. It’s going to keep growing.
So the status quo, doing nothing is not an option. So just as what you would do with parents is an option. I believe that to assist that and the lives of the parents you’re helping, once you finish working with them in the groups, and these parents have got to battle the school systems and they’ve got to battle the secondary school systems. They’ve got to battle state-based equipment schemes. Heaven forbid they actually might want to move around this country and actually change jobs.
And then these children that grow into adults have got to work out secure accommodation and employment, participation and a life full of meaning and quality. So I would certainly put in a personal plug that as many MyTime groups as possible that are interested in disability, put submissions into the national enquiry by the Productivity Commission to say how can the service system work better?
You represent thousands of parents who are the consumers at the end of the day in a system which doesn’t work properly. You have invaluable knowledge and so do parents you talk to, and I believe that MyTime networking, and the Parenting Research Council and all the diverse communities from which you’re drawn, you should be lending your voice because I’m sure that you, like I, when I’m getting literally thousands of constituents and people talking individually about their problems. There has to be a better way of doing business in disability and you are invaluably placed to articulate and provide a voice to a whole lot of diffuse, although numerous groups, parents and kids.
Anyway, I hope you don’t mind me talking about that particular aspect of disability because it seems to me that if you plug a hole in the system, and then what happens is we move from one leaking bucket to the next, what I’d like to do is assist the parents that you work with, be able to make some decisions for their children, with their children, so that they can have a life which isn’t a series of collisions with different parts of the system.
I do think that disability is rising in political attention but I don’t underestimate – and this doesn’t involve MyTime doing 100 per cent differently to what you’re doing. It involves two to three per cent differently. Get those parents thinking about the inquiry into National Disability Insurance Scheme, because it’s only with the amplification of numerous participant voices that something can actually change.
Barack Obama talks in America and the work he – we know he’s done on national health care in the United States and affects 30 million Americans, remarkable change in national health insurance.
But when I look at the number of Australians with severe and profound disability, one and a half million. And I look at the number of full-time carers, half a million. That’s two million Australians living lives of quiet desperation.
And the older parents, and again, I don’t know all your circumstances, but I have no hesitation, I guess some of your will be acutely aware of this, that midnight sleepless anxiety of a parent in their 70’s and 80’s and beyond, wondering who on earth’s going to look after their adult child once they’re no longer there to look after them.
I think we have a chance to change that agenda for a number of people proportionately as great as anything that’s happened in the United States of America in recent years, but it will require people power and an application of effort that has ever happened before.
Not a lot of things to do differently, just a little bit.
I’m here to open the first National MyTime Forum. We will discuss many ideas. Aspects of disadvantage and disability are at the cutting edge, and therefore I think dual deliberations will be important.
I’m sure that you will provide today and will provide an opportunity for you to lead the way in a prudent service delivery. You are going to – and I’ll complete on this point – you may never get the financial recognition that you deserve. You may never get the recognition for either your physical efforts or your intellectual efforts.
But what I’m very certain of is that you might not to see the recognition of your emotional efforts. To operate at the level you do with the people you do, it requires a degree of emotional commitment which is more than just physical and intellectual, but the value of what you do is untold. The ease to which to add certainty, a direction that challenge, that sense of isolation I initially spoke of, the emotional strength that that requires is significant.
For those of you who work with various groups, you’re not allowed to have a bad day. You know, people I used to know in the steel industry or oil rigs, they like the product, they didn’t have to smile and be emotionally committed to Exxon and Rio Tinto.
Some people can go to work every day and they don’t deal with consumers, so to that extent they can – they don’t have to keep – they don’t have to be on some sort of emotional upper all day. But I’ve got not doubt that the work you do does require you emotional commitment. And for that value and contribution of your emotional energy, I think that makes a big difference in terms of the success of this program, and the relevance of this program in people’s lives.
I think MyTime groups are a place of comfort and growth. I think that most importantly what you do is you make a difference for wonderfully, beautiful, unique and vulnerable children who should be equal citizens of our nation.
So I congratulate you all for the work that you do, for the opportunity to share with you recognition of what you do, but also the importance of what you do and the importance of the disability debate in Australian politics in this current year, and I’m very keen, as I know my departmental representatives are to see outcomes of your discussions today. Thanks very much.